My daughter’s birthday is in November. As any mom, I get excited as her birthday gets near. But for me, her birthday is a time when celebration and grief collide. There’s a sadness and a grief that is forever intertwined with her birth.
If you’ve followed my blogs, you already know that my oldest daughter was born with a chromosome condition called Partial Trisomy 18 or Edward’s Syndrome. She is turning 12 this November, which is nothing short of a miracle. She is a living, breathing miracle and so each of her birthdays is extra special and is met with extra excitement and celebration.
But, her birthday, her birth, is also a traumatic event. The events that unfolded during and following her birth brought celebration and grief together in way I never imagined possible. It’s impossible to separate the joy from the trauma and grief. I would say it’s gotten easier with time, but I’m not really sure that’s true. Every year, as her birthday approaches, I am transported back in time to the emotions no mother should have to experience after the birth of her child.
My Daughter’s Birth
Let me back up and start from the beginning. I had an uncomplicated pregnancy with no prenatal testing done and was blissfully unaware that the child I was carrying had a genetic condition that was deemed “incompatible with life” by the medical community. I went into labor with her 2 days before her due date with no issues. Her delivery was a bit of a whirlwind as they couldn’t detect her heartbeat while I was pushing and ended up using a vacuum to get her out quickly. She passed her APGAR test, was pink and screaming. She was beautiful and perfect and seemed absolutely fine to us. We had no reason to think there was anything amiss.
When our Celebration Turned to Grief
Our daughter was born late at night, 10:28 pm to be exact, so we had her all to ourselves for several hours. As first-time parents, we just soaked it all in and were over the moon about our little girl. But when the pediatrician came in to look her over in the morning, our world was flipped upside down. I can still remember watching him examine her. It’s burned into my brain because I had no idea he was about to scar me for life and forever change our world.
When that doctor spoke, it was like the air was sucked out of the room. All the celebration about our new perfect little one quickly turned to grief. He told us our perfect baby girl had Trisomy 18 and she would live a few weeks or maybe a few months. My husband and I crumpled into each other and bawled. I remember calling my best friend, my sister through life, but not blood. She was so happy to hear from me and it was all I could do to get the words out. I told her she needed to come immediately. I needed her and I wanted her to get to meet my baby girl before she died.
Let that sink in for a minute.
Instead of celebrating the birth of my baby and letting everyone congratulate us and gush over her, we were having to tell everyone that she wasn’t going to live. That they needed to come see her immediately or they might not get to. Instead of sharing our exciting news with the world, we were trying to figure out how to tell them this awful news. I had a newborn photographer on standby for pictures within the first few days and had to call her and explain that we needed to do the photos immediately before she passed away. I believed in that moment that those would be the only photos we would ever get of her.
And it wasn’t just our celebration that turned to grief. The nurses apologized to us. They were truly sad too. When we left the hospital, the nurses looked at us with expressions of pity, grief and sadness instead of joy and happiness. The looks on their faces is something I’ll never forget.
Her First Year of Celebration and Grief
In those first weeks and months, we were enveloped by kindness and prayer, from friends, family and even perfect strangers. My friend’s church group sent meals to us for 2 weeks. People we had never even met (and still haven’t to this day). Our friends and family gathered to meet our precious girl. But all of those interactions were met with sadness instead of the joy it should’ve been.
The holidays, and my own birthday, immediately followed her birth. It was really, really hard to enjoy those events, but we did our best. That whole first year was really tough. We had a couple of close calls when we almost lost her. Every little thing set off alarm bells in our heads. Honestly that whole year was terrifying.
As her first birthday neared and she continued to defy the odds. I wanted to plan a celebration. After all, what first birthday could be more deserving of the biggest celebration ever than one for a little girl who wasn’t supposed to live to see it? But I was afraid to plan something in case she didn’t make it. The grief was still there. It was an awful feeling, and something that I struggled with for a few years of her birthdays, not just the first one.
Celebration Despite the Grief
As the years went on and she continued to prove the doctors and her diagnosis wrong, some things did get easier. I no longer live in fear that she’s going to leave us (at least not anytime soon.). Sometimes I now worry about the opposite – what if she outlives me and my husband? But that’s another topic entirely. Now I celebrate her birthday and have no trouble planning her parties well in advance (a big relief for this planner personality!).
Even so, I still struggle with the trauma of her birth. The joy of another year with her is forever tied to the grief, pain, sadness and shock that came with her arrival. I’ve tried to stuff those feelings away over the years. I’ve tried not to think about them. Because, after all, she’s still here and that’s all that matters. But that’s not how it works when celebration and grief are forever tied together. So I do my best to celebrate her with only happy tears and accept those other emotions too.
I wrote a blog a few years ago about how telling your story can be a lifeline for others. So I’m telling this part of my story now to help anyone else who may be in the same or a similar situation. Many women experience different kinds of trauma surrounding the birth of their children. If you’ve experienced this, I just want you to know you are not alone.